Monday, January 21, 2013

I've gotten to hear this entertaining story from Cicily's nurse and teacher. Cicily's school had a lockdown drill (where classroom doors are locked and everyone goes to a pre-determined safe "hiding" spot). So Cicily and her 5 fellow classmates, along with Cicily's nurse, teacher and 4 classroom aides are all locked-down in their classroom bathroom. Yes this bathroom is large, but not that large when you factor in 6 adults, 6 children and wheelchairs! So while they are all enjoying their tight space together time, the fire alarm is sounded. Cicily's teacher says, "plug your ears!" to everyone. Cicily immediately gets a big smile and yanks off her hearing aids and tosses them! Apparently she was successful in lightening the mood, which knowing Cicily, is exactly what she was going for.

Tuesday, January 15, 2013

We were playing a game of "Grandma, Mom, baby" this week. I was the Grandma, Sophie the Mom and Sophie had a doll baby. When Cicily got home from school (she LOVES playing in Soph's room lately) we brought her in to play with us. I said, "hey Auntie Cis do you want to meet your new baby niece?" And it hit me that she won't get to meet her neices or nephews in this life. And I wondered at how that would make Sophie and Maya feel. Will they take their babies to the cemetary to meet their Aunt Cicily? What will they tell them about her?
So we've been playing a lot of "Grandma, Mom, baby" and Cicily has enjoyed getting to know Sophie's baby - even if it's just the pretend ones.

Cicily (and her teacher) invited Sophie to come on a field trip to the state fair. Both sisters were happy to share the experience of petting all those animals! (Yes, we almost came home with a bunny.)

Cicily loves to read books with Sophie before Soph's naptime. And Sophie likes to give Cis a kiss.

Sophie and Cicily were doing makeup this afternoon. Even while getting poked in the eye with eyeshadow, Cis was laughing her head off at her little sister giving her a makeover.

We often joke that Sophie was born to make Cicily laugh. From the day Sophie was born Cicily has given her looks of pride and amusement - almost like a Mom does. Maya has always made Cis laugh, but there's just something different about Cis and Sophie. Sophie can get a big belly laugh out of Cis better than anyone else (including Dad- which is an accomplishment!). Cis takes absolute pride and joy in seeing her baby sister being happy, silly, and learning new things.

Wednesday, January 9, 2013

Cicily has had her yearly super-respiratory illness the past couple weeks. This means she wakes up and coughs and cries for a while many times per night. Maya has been coming in to wake us up if we don't hear Cis coughing. "Mom, Dad, Cis really needs a suction." Then Maya figured out if she holds Cicily's hand or sings her a song after we leave, Cis will happily fall back asleep. It's true, Maya's a fantastic big sister.

Tuesday, January 8, 2013

Right before Christmas I went to Cicily's school (while she came home to play with Grandma) to have her first Kindergarten IEP. (An IEP is an educational plan with education and therapy goals.) I was so excited to meet her new occupational therapist Jessica and A.P.E. coach Jill but a little nervous because I always get emotional at IEPs.
So we went around the table and Cicily's teacher and therapists all explained what they would like to work on with Cicily for the rest of the year. I was so impressed with how well everyone knew and understood Cicily.
Her teacher has been fantastic with Cicily all year! She did tell me that Cis somehow commands respect from the boys in her class. I guess they like to pinch each other to mess around, but they never do with Cis! They'll joke around with her, and her with them and she'll pull on their clothes or chairs, but they don't mess with Cis.
Her speech therapist described the innovative ways she stabilizes Cicily's body to help her access her speech device. (An Ipad with an app that allows Cis to push a button -such as "book" - and the Ipad speaks, "book".) And she has learned that Cicily will work hard for a given, set amount of time, but when that time is up - Cis cannot be persuaded to do any more!
Her occupational therapist said she noticed Cicily wasn't very motivated with standard exercises so she comes up with fun crafts for Cicily to do each week and works on fine motor skills while doing art. Cicily is always so proud and excited to show these to us when she gets home!
Her physical therapist has gotten Cicily to love using a walker around school. (She's kind of hated them in the past.) His secret is they never go "walking" they go on "parade" to the library. Of course Cis would be motivated by walking to a room full of books!
They all talked about reading her facial expressions and body language. They all seemed to really understand Cicily in an impressive way. I'm continually amazed at how God puts the perfect people into Cicily's life at just the right time. And no, I didn't cry this year! (I teared up so many times throughout the day just thinking about it all, I guess I got it all out.)

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.